Tag: autism


Jan
2017

“Autism Knows No Borders”

categories: Autism

I am a public health researcher. My interest is in how disability Circle of children with the words Awareness and Acceptance in the middle.affects people all over the world. In the U.S., many doctors and teachers know a lot about autism. Every day we learn more about how to care for people with autism. We are learning to value their strengths. Many students with autism learn in regular classrooms. Many movies and books discuss autism. In the United States, autism is seen, heard, and talked about.

People with autism live all over the world. In many places, there is little known about it. In some cultures, there is not even a word for autism. Molly Ola Pinney started the Global Autism Project (GAP) to spread global awareness. She started it when she lived in Ghana, a country in West Africa. In Ghana, people often believe that evil spirits cause autism. Because of these beliefs, families often keep autism a secret. These families feel very alone. GAP aims to provide people with accurate facts.

Almost 60 million people with autism live in developing countries. GAP is building a global network of people who understand autism. It trains therapists, teachers, and families all over the world. It helps people create autism programs in their own cities and towns. The goal is to integrate people with autism in their own communities. Here are some real life examples of GAP’s work:

  1. Partnership with an autism center in the Dominican Republic – GAP in Dominican Republic
  2. Skill Corps in Kenya, January, 2016
  3. Teaching ABA Skills in India – What a difference a year makes: ABA in India

To learn more, see the Global Autism Project web site.


Dec
2016

Autism Spectrum Disorder: The Gray-Zone

categories: Autism

cartoon of a person with question mark

Butterflies. Anxiety. Sigh… What will their response be? Will they be extremely upset and not agree? Or will it make sense to them?

…Another not so clear-cut diagnosis of autism spectrum disorder (ASD).  Yes, I agree that his behavior was not typical for his age, but does it really fulfill diagnostic criteria?  Let’s see.  He has language delay… check.  He takes a long while to respond to his name… check.  Yes, but he does respond after the 6th time and was usually distracted with a toy.  I had to work to make eye contact… check.  Yes, but he was so interested in all our toys.  He would look at me when I got on his level.  Oh, he did point to request! Yea, but my colleague says that it was to meet his needs only. Ok, so he may have some delays in his social communication. 

Repetitive behaviors?  Well, he did flap and jump a few times when we brought out the bubbles.  Does that count?  Yes… check.  What about his restricted interests?  He did play with the cars, but what toddler boy doesn’t like cars?  Sometimes I did even get him to play with something else.  Well, he needed a lot of prompting for pretend play; he really only pushed the car and crashed it into other cars.  Repetitive play and restricted interests… check.  No reported or observed sensory concerns… no check.

Ok, so he was referred for evaluation for possible Autism Spectrum Disorder (ASD).  His Early Intervention (EI) team is concerned, but his parents aren’t so much.  However, he did score high on his Autism Diagnostic Observation Schedule (ADOS) and meets DSM-5 criteria. Then why are you questioning it?

“Why are you questioning it?”  This is a common query in my head.  Sometimes it is clear, but other times it is not.   Sometimes when you speak to his EI team, they may convince you that he has ASD.  However, the child may show interest in you and others that makes you question it.  Sometimes, he just seems like a busy kid that makes you work for his attention.  This may make you more concerned for early signs of ADHD.  Or you may wonder if it is just delays in all his skills, especially his intelligence.  If we really think about it, a child whose brain is younger than he is, may appear younger socially and need a lot of effort to get his attention. The reasoning often becomes circular.

As a new Developmental-Behavioral Pediatrician, I have struggled with this worry.  With each child, I find myself asking: “Are all toddlers who flap, toe walk, and take just a little too long to respond to your request really autistic? Or could it be something else?”  I have relied on my colleagues to help me answer these questions, but the question has not gone away.

Most recently, I read an article about some children incorrectly being called autistic.  Although the article suggested that “these children were less likely to be diagnosed by a specialist,” it did make me wonder if I am not the only one with these questions.  It also made me ask, could children that live in this gray-zone be called something else that we may or may not yet know about?

As the amount of children who are called autistic increased over the past 2 years, I began to wonder how many of those children fall into this gray-zone.  I wonder how many people are still in the gray-zone without any label.  I also wonder if I will ever be able to answer these questions without any doubt.

For more information about the article, please see: Autism May Be Over diagnosed in the United States


Aug
2016

Autism Swim and Water Safety

categories: Arts & Fun, Autism
Young child using kickboard and guided by a female swim teacher in a pool
Young child being guided by a swim teacher

When a child is diagnosed with Autism, the last thing parents are thinking about is swimming and water safety. But, there is information that tells us they should.

  • 9 of 10 children who die before age 14 do so by drowning.
    • National Autism Association, 2012
  • Drowning is a known danger for children who are 1 to 4 years old. The risk decreases with age for most children. For many children with Autism, the risk does not decrease with age.
  • Drowning is the number one cause of death for children with autism age 14 and under.
    • National Autism Association, 2012

Why are children with Autism at greater risk?

Many children with Autism are drawn to water. Scientists and researchers do not know why.

Running away from safe places is a problem for many with autism. This behavior stops happening around age 4 for typical children. For many children with Autism, it continues well beyond age 4.

Professionals rarely teach parents about the risk of children running from safe environments.

Language delays and sensory problems can make learning to swim difficult. Many children with Autism learn differently. What they hear may not be what is said. What they have to say may not be heard.

Sensory differences are also a challenge. Water temperature. Noise level. Touch. All can get in the way of learning.

Autism-specific swim programs are hard to find. Typical swim programs may not be best. Some children may need trained teachers. One-on-one teaching may be necessary.

What can parents do?

Manage the surroundings. Make your home safe. Use fences. Use door and window alarms. Consider a tracking bracelet for your child. LoJack Safety Net is waterproof and can be tracked under water.

If you have a pool, call a professional to help with making it safer.

Speak to your local fire and police departments. Be sure they know you have a child at a higher risk for running from safe environments.

Work with your ABA provider and/or school system to develop a plan at home and at school. Make sure plans are in place. How can your child be kept safe? What is in place to make running from safe settings more difficult? What is the plan if your child is missing? Ask your school or ABA provider to work on words such as “DANGER” and “STOP”.

Tell everyone who works with your child if your child is drawn to water. Identify nearby water sources. List them in your plan.

Helpful Resources


Feb
2016

Lessons Learned from the Massachusetts (MA) Act Early State Team 2015 Spring Summit

categories: Autism

”The Massachusetts State Team created a guidebook for Considering Culture in Autism Screening ”

I was an intern for Massachusetts Act Early this summer. This program works to improve autism screening in the state. I went to their Summit in June. There were 56 people from 7 states at the meeting. They discussed the role of culture in Autism screening.

Why talk about culture in Autism Screening?

People in this country are from all over. Some people just moved here. Sometimes they do not speak English well. Often, parents use other languages. The way a culture thinks about how a child grows may not be the same as American culture. So, doctors need to think about culture and language when screening for autism. If not, some children may not be screened or diagnosed.

The meeting involved a training on Autism screening. The training talked about culture. It included the following tips for doctors.

  • Think about the child’s background.
  • Provide screening tools in the child’s language.
  • Have someone translate if needed.

We talked about why it may be hard for a doctor to screen for Autism. We also talked about ways to help detect Autism while thinking about culture. I wrote a
report about the findings of the Summit (PDF).

To Learn More


Apr
2014

What’s in a Diagnosis? The Neuro-diversity Movement

categories: Autism

neurodiversityToday I sat in a feedback session, giving news to a family that their child met the criteria for having an autism spectrum disorder. I took in their mixed sense of grief and relief, because in many ways they had already suspected this diagnosis. I went on to talk about the unique strengths of that particular child and how specific services would address his challenges. I have gone through this process now many times with many different families; however, with each family, I ask myself again “What’s in a diagnosis” for this particular child? For this particular family?

I am a pediatrician who works with children who have an autism spectrum disorder and their families. Our first contact is often one where the family describes the behavioral concerns that led them to seek an evaluation. The simpler part of what I do is to pull together these concerns and my testing results to provide a diagnosis. The more challenging and rewarding part is to walk with families through their journey of recognizing and building upon the unique strengths of their child as they advocate for him through a myriad of systems.

We often express the need to define a diagnosis for the purposes of initiating services. A diagnosis can also help families, educators, and community members appreciate the neuro-developmental basis for seemingly ‘negative’ and difficult behaviors. By explaining why certain behaviors happen, we can start to identify specific areas to work on with the child and family.

I bring up the strengths of that particular child, and emphasize the uniqueness of every child with an autism spectrum disorder. I acknowledge the spectrum, and how even the ‘strengths’ that I defined are through the lens of what should be ‘neuro-typical,’ rather than a true recognition and celebration of uniqueness. It is exactly this spectrum of diversity and the remarkable strengths of individuals with autism spectrum disorders that have brought about the neuro-diversity movement. The neuro-diversity movement, although controversial, celebrates that autism, as well as other developmental disabilities, are less about disorders/illnesses to be cured, than they are about different ways of being. This movement, however, is challenged because in its extreme form, it undermines the value of research and interventions aimed at curing autism and minimizes the problems and struggles that an individual with autism faces.

The neuro-diversity movement is only one aspect of how autism has perhaps catapulted change in policies and practice among several social systems, including education, employment, and healthcare. The broader reaching implications of these changes may then have an impact across all disabilities. Ultimately, the social changes initiated by a better understanding of autism spectrum disorders, may be leading those of us caring for individuals with disabilities down a path of better inclusion, more appropriate accommodations in education and employment, and comprehensive access to healthcare services.


Dec
2012

“Living my Childhood Dream”, by Tracy Thresher

categories: Advocacy

Tracy Thresher Vote HereTracy Thresher lives and works in Vermont as an advocate for people with disabilities. He has written:

“As a child, I struggled with no reliable way to communicate. I now live out my dream of traveling to other states to educate others on movement and communication differences. Primarily, I advocate to promote the Presumption of Competence. “ (Blog Post, October 30, 2012)

This week we are pleased to share the transcript of an interview with Tracy that was recently published in Autism Around the Globe .

I am Tracy Thresher from Barre, Vermont. I now live part of my childhood dream thanks to the support of facilitated communication. Master trainer, Harvey Lavoy, has been my primo facilitator since the early 90s. Harvey, master trainer Pascal Cheng and my pal, Larry Bissonnette, and I have presented to educate others for many moons. Since the release of “Wretches & Jabberers”, Gerry Wurzburg’s documentary about our lives and work, our travel calendar has been wonderfully and fantastically full of opportunities to promote the presumption of competence. Please read
my blog  to follow along on my journey.

Below is a transcript from my interview with the NLM Family Foundation featured in a video montage created by the Foundation titled, “In Their Own Words: Living with Autism in Adulthood.” I have had mind blowing professional growth thanks to communication. Communication opens the door to opportunity.

What are your hopes and aspirations for creating the adult life you desire?

My hopes are like a beautiful tapestry which I need to find the perfect combination of support to make into my own magic carpet. My wish is to create the life I see in my head on the mountaintop of my Green Mountains. To be true to the Tracy on the inside, I need to have people in the mindset of peaceful open-mindedness.

It is my desire to be independent to the best of my ability. I communicate more slowly than I wish to in this high-paced world but my thoughts are very quick. The touch of my facilitator must be one of peaceful calm. To build my dream of becoming an educator I pushed through many barriers of built up walls of enclosing people in institutions or encasing them in the trap of no outlet for their inner thoughts. It is more harmful to my soul to be in this stubborn body than I can type. To hope is to have faith in a future that includes professional growth and not the antiquated roles of paper shredding or stocking shelves but being respected for the knowledge this life has taught me.

My priority is to own or rent my own home or place with a good supportive roommate who is willing to be open to going through intensive training to get to see how my spirit relaxes with communication. I am not the person I appear to be upon a passing glance. To get to be the man I aspire to be is a lifelong journey. It is my vision quest to find more peace in my life. I think having my own home is the next step on my ladder of communication, as it is what I must have to be free of the encumbrances of others.

What are the specific challenges that you believe you face or will face in your adult life (housing, companions who assist you, living in communities, relationships, employment, education, etc.)?

As I mentioned, my priority is housing or more difficult to find is a companion to be my assistant in the life of becoming more independent. The hardest part is envisioning what I need but being unable to find the perfect combination of nice and firm communication partner. The world moves quickly and I need open-minded people who slow down to listen to my typing.

To live in the friendly Central Vermont community is a blessing. We have educated many people in our community by joining forces in schools. We have also spoken to legislators to let them see our intelligence. Our social fabric is beautifully sprinkled with an eclectic mix of abilities. There is more to be done and my fellow self-advocates and our supporters are tirelessly trudging up the trail to higher thinking. Through my work I have met many wonderful people who enrich my life and feed my soul to the point I dreamt of as a lonely boy.

My family loved me to the max; however, life in school absolutely traumatized me. It became unbearable to be thought of as a child who could not be educated. Now I mentor students. It is my mission to inspire children and show neurotypical kids how to slow down to listen to typing. More importantly, how to be a friend is what kids need to learn. I am thinking friendship is the way to open pathways to learning. On the mountaintop of success people need to have a hand to pull each other up.

On the top of my bucket list is to continue to learn and teach. I graduated from the school of hard knocks; now I try to prevent other children from living through the pain of a life of misunderstanding. I have friends who have made me proud by pursuing higher formal education. I would say my education continues through my work on the circuit of presenting to schools and communities. My employment is one of typing to educate. Working on presentations is on my mind constantly. I write it on my brain, and then I need my facilitator to be at my side to push the words out. To come from a menial job to a professional career is my proudest moment.

What types of programs or services would enable you to achieve the adult life that you envision and/or desire?

It is my desire to, of course, be as independent as my abilities allow. I want the same for all people. The Vermont legislature is better at listening to my typing than most other states. I understand politics and the need to divide services as fairly as possible. Ideally, I would like my services to include funding that is more reflective of the housing costs necessary to put me on the path to independence. The primary obstacle in my experience though is training of facilitators.

Harvey Lavoy, Pascal Cheng, Larry Bissonnette and I work hard to cover the state of Vermont on our shoestring budget but it is tough to get to everyone we would like to. For Harvey, it is a juggling of priorities that need to be addressed. My mission in life is to have the home of peaceful independence to communicate in daily life across environments. More than anything, I want to create a world of communication for all, to have our voices heard loudly from the hills.

Tracy Thresher
Self-Advocate, Activist, and Documentary Film Star

2012

 

 


Apr
2012

Autism-Got insurance?

categories: Autism

Gov Patrick signing Autism Insurance bill

 

Twelve years ago our daughter was diagnosed with autism. At the time, the doctor explained to us that autism was a neurological condition, and there was effective treatment that could help her. We had good health insurance and we’d always paid our premiums, so we assumed that insurance would pay for the prescribed treatment.

Because when your child has a serious medical condition which can be effectively treated, that is what they do, right? That is the whole purpose of insurance, no? If she had cancer, insurance would cover chemotherapy. If she had a brain tumor, insurance would cover the surgery.

But our daughter had autism. And we were about to discover what so many autism parents already knew – that having even the most comprehensive insurance plan meant nothing in the face of autism.

got insurance? not if you have autism!

It wasn’t right. It had to change. And though my knowledge of the system consisted of an insurance card, a sick child, and no coverage for her treatment, I decided to do something about it.

As Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM), I organized a grassroots effort to pass legislation requiring health insurance to cover autism treatments. Over several years, our small group of parents, armed with no more than an idea and a passionate determination, slowly made our way… from a legislator’s office in the basement of the State House to Fenway Park, we had the honor of watching Governor Patrick sign our bill into law in front of hundreds of people.

got insurance? now what?

We celebrated the victory. We had a new law. It was one of the strongest in the country. But even as the ink dried, we knew there was still work to be done. Because autism treatment had not historically been covered by insurance, the entire community –from families to professionals- all had questions about how the new law would work.

Recognizing this tremendous need for information and support, UMass Medical School established the Autism Insurance Resource Center at New England INDEX last year. I am honored to direct the Center, and proud of the work that we do in educating the community about autism insurance laws and in helping people with autism obtain coverage.

I wish I could say that our work is done; unfortunately true systemic change is slow. But we’ve proven that a small group of parents –armed with no more than an idea and a passion to do what is right – can make it happen.

Next week we will discuss how the law is working and how the Center is helping the Autism Community access coverage under the law.

 got insurance? yes we do!

 

About the author

Amy Weinstock is the Director of the Autism Insurance Resource Center at New England INDEX.  She served as Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM) and led the grassroots effortAmy Weinstock speaking at signing of the Autism Insurance bill to pass Massachusetts’ Autism Insurance Law.

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